Evidence map›Paper›PMID 41888925›Full record

ReviewGlobalization and health2026

Patient organizations involvement in healthcare: a rapid review and conceptual framework.

Arianna Gentilini, Iva Parvanova, Samra Ghazi, Kristy M Scarfone, Jillian Kohler

Abstract readReview
In one paragraph

Review in Globalization and health, 2026. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Not yet cited in PubMed.

0numbers the graph read from it
0cells of the map it votes in
0citing papers in PubMed
–field-weighted citation impact
1 · What the graph read from it

What it found

Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.

The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.

2 · The registry

The trial behind it

Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.

Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.

3 · Its place in the literature

Who cites it

0 citing papers in PubMed.

No citing paper in PubMed yet.

4 · The record

Corrections and comments

PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.

5 · Who and what money

Authors and funding

5 authors.

Arianna GentiliniCentre for Health Economics & Policy Innovation, Department of Economics & Public Policy, Imperial College London, London, UK. a.gentilini@imperial.ac.uk.ORCID 0000-0002-6943-6158
Iva ParvanovaDepartment of Political Science, LUISS Guido Carlo, Rome, Italy.
Samra GhaziLeslie Dan Faculty of Pharmacy, University of Toronto, Toronto, ON, M5T 3M7, Canada.
Kristy M ScarfoneLeslie Dan Faculty of Pharmacy, University of Toronto, Toronto, ON, M5T 3M7, Canada.
Jillian KohlerLeslie Dan Faculty of Pharmacy, University of Toronto, Toronto, ON, M5T 3M7, Canada.

Funding

Economic and Social Research Council 2480077
6 · The paper itself

Abstract

backgroundPatient organizations have become increasingly influential in the healthcare sector, offering unique insights into unmet health needs, disease impact, and patients' quality of life. These groups have evolved from advocates for access to treatment, as seen during the HIV/AIDS crisis, to active participants in the research and policy-making processes. Despite growing recognition of their critical role, a comprehensive understanding of their interactions with various healthcare actors remains limited. MAIN BODY: This rapid review aims to map the landscape of patient organization involvement in healthcare, particularly in high-income settings. We conducted a systematic search of MEDLINE, focusing on literature published between 2000 and 2024, and identified 61 relevant articles. The analysis revealed that patient organizations interact with a range of actors, including pharmaceutical companies, healthcare professionals, payers, health technology assessment bodies, and regulatory agencies. Key themes were identified around conflicts of interest, especially with regards to the pharmaceutical industry, where concerns about transparency and independence were prevalent. The review also highlighted the vital role patient organizations play in research and development, regulatory approval processes, and reimbursement decisions. The conceptual framework developed from this review outlines these interactions across the pharmaceutical lifecycle, emphasizing the varied and significant contributions of patient organizations.

conclusionThis review underscores the need for more transparency and meaningful engagement of patient organizations in healthcare decision-making. While their involvement has been primarily studied in the context of pharmaceutical industry relations, further research is needed to explore their interactions with other relevant actors. Addressing funding challenges and expanding research beyond well-studied regions are crucial for fully understanding and optimizing the role of patient organizations in healthcare. CLINICAL TRIAL NUMBER: Not applicable.

Indexed as

Delivery of Health CarePatient ParticipationConflict of InterestDrug IndustryHumansConflicts of interestHealthcareHealth technology assessmentPatient organizations

Identifiers

PMID41888925
PMCPMC13141336

What Socratic holds

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Registered trials

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Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the Socratic graph.